1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Anonymous217382 | @anonymous217382 | Feb 20, 2021
In reply to @cavlover "Hope you’re now with another doctor. No one should put up with that rude behavior." + (show)
@cavlover

Hope you’re now with another doctor. No one should put up with that rude behavior.

Jump to this post

Dear cavlover, I am a catlover! Really though, thank-you for support. The (I was going to say the funny thing is) not-so-funny thing is, the hospital that the doctor works from has horrendous reviews. I about fell off the chair the other day. I was looking up medical records for this hospital, and the reviews for it popped up....about 100 of them spanning the last four years. There are only a few that have more than one star out of five, with most people stating they would not have given it any stars. They had to leave at least one star, for the review to be published. It is sad to say, but it did make me feel better knowing I am not alone. That Isn't very nice of me, but human unfortunately. One review summed up all the others when it said to only go to this hospital if you want to die! What The heck is happening to our healthcare system? When I was a kid, my folks always took me to military hospitals because my dad was a 22-year Marine--survived The Chosin" Reservoir conflict in WWII. Those hospitals were the greatest...at least treating kids like me with earaches and such. Now, it IS like they want you to die. Do they? Or, do they just not care when a person gets old?
Thank-you again for the much needed support!

REPLY
1 reply
karensarasota | @karensarasota | Feb 20, 2021
In reply to @anonymous217382 "Dear cavlover, I am a catlover! Really though, thank-you for support. The (I was going to..." + (show)
@anonymous217382

Dear cavlover, I am a catlover! Really though, thank-you for support. The (I was going to say the funny thing is) not-so-funny thing is, the hospital that the doctor works from has horrendous reviews. I about fell off the chair the other day. I was looking up medical records for this hospital, and the reviews for it popped up....about 100 of them spanning the last four years. There are only a few that have more than one star out of five, with most people stating they would not have given it any stars. They had to leave at least one star, for the review to be published. It is sad to say, but it did make me feel better knowing I am not alone. That Isn't very nice of me, but human unfortunately. One review summed up all the others when it said to only go to this hospital if you want to die! What The heck is happening to our healthcare system? When I was a kid, my folks always took me to military hospitals because my dad was a 22-year Marine--survived The Chosin" Reservoir conflict in WWII. Those hospitals were the greatest...at least treating kids like me with earaches and such. Now, it IS like they want you to die. Do they? Or, do they just not care when a person gets old?
Thank-you again for the much needed support!

Jump to this post

Please take me off your email list you&apos;re driving me crazy with 10 to 15
emails a day

REPLY
2 replies
ginak | @ginak | Feb 21, 2021
In reply to @karensarasota "Please take me off your email list you&apos;re driving me crazy with 10 to 15 emails..." + (show)
@karensarasota

Please take me off your email list you&apos;re driving me crazy with 10 to 15
emails a day

Jump to this post

@karensarasota You have to change your own settings and/or notifications in your profile to not receive emails. Unfortunately, I’m not sure how you do it so I can’t help. But I’m sure one of the mentors can help you.

REPLY
1 reply
judyhodgern | @judyhodgern | Feb 21, 2021
In reply to @anniepie "Yes Sue, I've looked at quite a lot of that research too. qPCR machines (Quantitative or..." + (show)
@anniepie

Yes Sue, I've looked at quite a lot of that research too. qPCR machines (Quantitative or Real-time PCR machines) are better now at detecting small amounts DNA of NTMs.
My feeling is they could start beingb a lot 'kinder' to the patient....(especially if you must have bronchoscopies and can't get info out of a hospital without a long wait).
Most of us only want to know if we are still sero-positive for an NTM. They could use a qPCR machine to quickly tell if we are still positive FIRST, (i,e, if they still find any mycobactetial DNA) and relay that info to us much more quickly. Then the exact NTM disease typing could take longer after that. A lot of our tests are just looking for persistence of the same NTM we were originally diagnosed with. To wait so long for any results EACH TIME is very unfair to us patients.
But instead they continue to do it the cheaper, older way, slowly growing the bacteria in a dish, and make us wait and wait and wait.

I'm just grumbling, LOL. But I really do think most other patient groups with other kinds of diseases would complain a lot. The long long delay we face each time just makes me feel like the system doesn't care much about us.

Jump to this post

Hi Sue thank you for your answer. You have wonderful answers and knowledge about the field of NTM and always are right on the dot of controversy in such a kind way. Does Mayo have a research clinic that they could answer this or National Jewish or NTMIR as well? Could the mentors get this inquiry to Mayo’s Drs of expertise/research. It would be very interesting for all of us for them to answer this. Thank you—

REPLY
1 reply
judyhodgern | @judyhodgern | Feb 21, 2021
In reply to @pssurfer "On the topic of nebulizer/Aerobika use. I use the two attached to each other with 3%..." + (show)
@pssurfer

On the topic of nebulizer/Aerobika use. I use the two attached to each other with 3% saline. I do this while simultaneously running my vest for 30 minutes. My pulmonologist recommended this approach. Mucus often comes up after the first 10 minutes and continues later in the vest/saline/Aerobika treatment. Sometimes there is nothing substantial until after the treatment or when I subsequently nebulize Perforomist. If I drink water or a citrus drink after the treatment, that seems to help bring up the mucus. With brochiectasis and a pseudomonas colonization, my lungs are producting a lot of mucus. I'm only taking azithromycin at this time. I've been off other antibiotics for the pseudomonas for at least 6 months. I'm convinced that keeping my lungs clear of a mucus breeding ground with this vest/saline/Aerobika treatment is the reason. Have others followed this or a similar approach and share my speculation about effects?

Jump to this post

Hi pssurfer, I have used your vest aerobika and nebulizer approach and I think it’s a good one. I wondered what your performomist is I’ve not heard of that. How do you use it?

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 21, 2021
In reply to @judyhodgern "Hi Sue thank you for your answer. You have wonderful answers and knowledge about the field..." + (show)
@judyhodgern

Hi Sue thank you for your answer. You have wonderful answers and knowledge about the field of NTM and always are right on the dot of controversy in such a kind way. Does Mayo have a research clinic that they could answer this or National Jewish or NTMIR as well? Could the mentors get this inquiry to Mayo’s Drs of expertise/research. It would be very interesting for all of us for them to answer this. Thank you—

Jump to this post

National Jewish Health has an annual or biennial conference on NTM where all of the latest developments are discussed - there should be one coming up. The presentations are recorded and available on YouTube. I look forward to hearing from them this summer or fall - here is the series from the conference in 2019 https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos
Sue

REPLY
2 replies
judyhodgern | @judyhodgern | Feb 21, 2021

Thank you Sue that was an excellent website!!!

REPLY
judyhodgern | @judyhodgern | Feb 21, 2021
In reply to @ginak "@karensarasota You have to change your own settings and/or notifications in your profile to not receive..." + (show)
@ginak

@karensarasota You have to change your own settings and/or notifications in your profile to not receive emails. Unfortunately, I’m not sure how you do it so I can’t help. But I’m sure one of the mentors can help you.

Jump to this post

I did it in the unsubscribe area at the end of an email and after a year I missed it so much I sign back on!!!!

REPLY
1 reply
jr2366 (Jennifer) | @jr2366 | Feb 21, 2021
In reply to @judyhodgern "I did it in the unsubscribe area at the end of an email and after a..." + (show)
@judyhodgern

I did it in the unsubscribe area at the end of an email and after a year I missed it so much I sign back on!!!!

Jump to this post

👍

REPLY
dee65 | @dee65 | Feb 21, 2021
In reply to @sueinmn "National Jewish Health has an annual or biennial conference on NTM where all of the latest..." + (show)
@sueinmn

National Jewish Health has an annual or biennial conference on NTM where all of the latest developments are discussed - there should be one coming up. The presentations are recorded and available on YouTube. I look forward to hearing from them this summer or fall - here is the series from the conference in 2019 https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos
Sue

Jump to this post

This was a wealth of information...looking forward to you sharing this year’s conference. Mega thanks for putting it out there for those of us who haven’t been on this Mayo forum long.

REPLY
View MoreView Less
Please sign in or register to post a reply.